Why Every Patient Needs an Advocate

By Jon Caswell

American healthcare is complicated and getting more so. Even the most informed patients and family members entering the healthcare system may have difficulty knowing how to navigate it to receive the best care for themselves and loved ones.

Why every patient needs an advocate

Although a loved one may normally be capable of making decisions for themselves, there may be circumstances where they need to seek the help of a trusted family member or friend when recovering in the hospital setting. Sometimes a loved one’s mental or physical condition may be such that they are no longer able to voice their opinions or designate another person to make these decisions on their behalf. A patient advocate designation is a legal document that allows individuals to designate another person(s) in advance to make medical treatment decisions for them in the event that they become unable to make medical treatment decisions for themselves due to a mental or physical condition.

For example, some people take longer to fully overcome the effects of anesthesia than others. They may appear as if they’re understanding what the medical staff are telling them, but they may not be fully comprehending or may not be retaining the information. There are a variety of circumstances which may occur in the healthcare setting that may render a person temporarily unable to make decision for themselves. Situations like these are why every patient should appoint a patient advocate to represent their individual needs within the healthcare system.

A patient’s family members may not be legally entitled to access a patient’s personal and health information unless they have been designated by the patient as the patient’s advocate. Under the Health Insurance Portability and Accountability Act (HIPAA) of 1996, hospitals are required to protect patients’ personal and health information and may only allow designated persons to access a patient’s confidential medical information. This means that family members do not have automatic rights to look at their loved one’s medical charts or be granted access to other medical information.

Caregiver and advocate Sue Fabian with her mother Violet

Three times Fabian believes she saved her mother’s life just by paying attention to what was (and was not) being done and understanding what was required.

Every individual has the legal right to make decisions regarding their own medical treatment. By designating a patient advocate (PA), you effectively appoint another person to exercise decision-making authority over your care, custody and medical treatment decisions during any period in which you are unable to participate in making those decisions.

In 1990, Sue Fabian experienced this complexity when her mother, Violet, had a stroke that left her with a paralyzed right arm, weak leg and severe communication challenges. Fabian was Violet’s patient advocate and was with her mother every day during her treatment and still mistakes were made. As a result of her experience, Fabian went back to school and became an elder law attorney and a geriatric-care manager to more effectively advocate.

Fabian believes every patient in a healthcare facility needs an advocate. Defining "patient advocate" seems simple. Each state has laws that specify how and when an individual may name a person to act on the individual’s behalf and make medical decisions when that person is no longer able to make medical decisions for himself or herself. Definitions vary from state to state. For instance, some states refer to a patient advocate as a "medical power of attorney" or a "health care proxy."

What if someone doesn’t have an advocate?

If an individual with no PA receives Medicaid or has a reduced life expectancy due to an advanced illness, state law will allow the family to make medical treatment decisions when the individual is unable to do so. However, it isn’t clear who makes decisions if there is conflict among family members. For instance, in Michigan (where Fabian practices), Medicaid "next of kin" statutes prioritize certain family members as advocates. In other circumstances, when a PA has not been appointed by the patient, the court will appoint a guardian to act as the patient’s advocate under certain, narrow conditions. However, the designation of a PA will usually eliminate the need for a court-appointed guardian.

Who can be an advocate?

To ensure someone can advocate for you, anyone age 18 or older who is of sound mind and not under duress, fraud, or undue influence at the time of signing can complete a patient advocate designation or medical power of attorney (as applicable) to appoint a trusted individual as their PA. This can be done at any time, even while the patient is in the hospital, as long as the patient is not incapacitated and is of sound mind.

How do I designate an advocate?

"If you know you are going into the hospital, you can go online and get a template from your state website designating a PA," Fabian said. "The hospital may even have a form for medical power of attorney." If you have difficulty finding such a form, Fabian suggests calling your local legislative representative. The designation must be properly signed and witnessed by two people. The witnesses must not be the appointed PA, relatives, will beneficiaries, heirs, care workers, or employees of a facility where the patient resides. Note that the designation is only effective when the patient is no longer able to participate in medical treatment decisions, which determination is made by the patient’s attending physician in consultation with another physician or a licensed psychologist.

A PA must sign an acceptance of the designation, agreeing to the terms of the appointment as specified under state law. Legally designated PAs have certain rights: they can look at medical records; make medical and placement decisions; talk with doctors and nurses or anyone involved in the patient’s care; and be involved in formulating the treatment plan.

The PA has a duty to act in the patient’s best interests and must take reasonable steps to follow the patient’s expressed desires, preferences and instructions.

What are a PA’s responsibilities?

While a PA has these rights, they also have responsibilities. Most importantly, a PA has a duty to act in the patient’s best interests and must take reasonable steps to follow the patient’s expressed desires, preferences and instructions. They need to educate themselves about the patient’s medical condition. For some conditions, your healthcare provider may have printed information they can give you. Doing an internet search can yield valuable information, but make sure that the websites you reference are accurate and reliable by looking at reviews or asking questions of the healthcare providers. Of course, if you are looking for information on cardiovascular disease, heart.org is the go-to source.

In addition to knowing about the condition, the PA needs to know the names of and reasons for all medications and tests. They should also understand how and when the medication is to be administered as well as what happens if it’s not given correctly.

PAs should insist that important notes or unique patient information be put at the front of their loved one’s chart. An example of this would be a note indicating a patient has difficulty communicating or a note pertaining to a patient’s comfort. For example, Fabian’s mother had dentures, which needed to be cleaned, so Fabian made sure that information was at the front of her chart.

It is important for PAs to be familiar with their loved one’s chart. The signed PA designation gives them that right. "It is also important for the PA to make sure the patient’s medical history is accurate," Fabian said.

A helpful practice for the PA is keeping a notebook for notes of what each doctor or nurse says and when they said it. "In modern healthcare, there are often multiple physicians involved in a patient’s care and they are not necessarily talking to one another," Fabian said. As a result, contradictory recommendations may be given. "By looking over the notes, the PA can get those points clarified."

The PA’s notebook should also contain a section to jot down questions as they arise so they are handy to ask when a doctor or nurse quickly pops into the hospital room.

Other than the hospital stay

At times a PA’s job is to review and sometimes appeal insurance claims. Each insurance company will have its own process for appealing claims. If the process is not outlined on the company’s website, it will be contained in your policy, Fabian says.

For patients of any age, including older patients or those who are more critically ill, there may be other responsibilities, such as:

Keeping up to date

It’s important to keep in mind that designating a PA is not a one-and-done kind of thing — the designation must be kept up to date. After all, our relationships and the people in them change over the years. For example, a previously designated PA may become chronically ill and be unable to fulfill the role. Make a point to review your designation and/or medical power of attorney paperwork annually.

Knowing when and how to approach the healthcare team

In Fabian’s experience, PAs should also expect complications that arise because patients and family members expect individualized care inside a healthcare system designed to serve the entire population. "PAs must learn when to take on trying to get the individualized care and know when to press healthcare workers," Fabian said.

That is not an easy position to be in, especially when mistakes can have dire consequences. Three times Fabian believes she saved her mother’s life just by paying attention to what was (and was not) being done and understanding what was required. For instance, in her last days, Violet was not eating, which drives down blood sugar levels, but according to Fabian, the healthcare facility continued administering her diabetes medication, further lowering her blood sugar. "That double whammy nearly killed her," Fabian said. "When I found her nearly comatose, I was able to get her to swallow sugar and revive her. I then discovered to my horror that neither the hospice nor facility nurse were comparing chart notes."

Having access to your loved one’s chart is important because that is where all the details are. "If necessary demand to see the chart," Fabian said. "No matter how well I knew my mom, I learned stuff from looking at her chart. You may have to be persistent about this because you may get pushback from medical staff. But a designated PA has a right to see that chart during a hospitalization, not just after."

Another advantage of seeing the chart is that it will generate questions, which the PA should write down in the notebook. It may also show the PA "loose threads" that he or she needs to follow up on. "If there is anything that doesn’t make sense to you, that is a loose thread," Fabian said. "Never hesitate to ask as many questions as you need to get clarification."

Being attentive to the multitude of important and diverse details can add stress and complicate communication. "I took care of Violet for 22 years, and it took me years to learn how to communicate with the healthcare staff in a way they could hear me and I could get the result I wanted without blowing up," Fabian said. The PA has to be mindful of communicating in a way that does not antagonize the medical team. "But that can be hard to do and keep doing over and over and over."

Poor communication is at the root of many problems. In most hospitals, the patient’s primary care physician is not the doctor coordinating care; that is done by an attending physician, or hospitalist, who works for the hospital. They are the quarterback running the team of specialists attending to the patient. The primary care doctor knows the patient better, but the attending physician has a lot more information about the crisis and up-to-date medical information. "Ideally they need to talk to each other," Fabian said, "but I don’t think that happens very much. So I would call the primary and ask them to call the attending and share information each needs."

"When approaching medical staff for information, I use the Rule of Four P’s: I am a patient, persistent, pleasant pit bull," Fabian said.

PATIENT — The person attending to your loved one may be at the end of a long shift. Certainly they are dealing with multiple patients. And their jobs require a lot of paperwork or computer input, so be patient.

PERSISTENT — Because medical staff are dealing with multiple details, any one request may fall through the cracks. Don’t be irritated if you have to ask more than once, but persist. Also, do not accept generalized answers. Persist in getting specifics.

PLEASANT — Stay mindful that you are dealing with a human being who has feelings. A little empathy on your part will improve your relations with the medical team.

Sometimes additional help is needed

Oftentimes family caregiver PAs are overloaded and don’t have the legal or medical knowledge to take on this intense, detailed and sophisticated role. When that is the case, you may need to reach out for help.

Hospitals have someone on staff called an ombudsman or patient representative whom you can contact to advocate for your concern. These are staff positions whose role is to help family members negotiate the bureaucracy that is the modern hospital. They can help get your concerns and messages to the right people so the correct action can be taken. They will help you sort out what are reasonable expectations and what are not.

It may also be helpful to talk with the hospital chaplain about your concerns. "They know all the doctors," Fabian said. "They know the hospital system. They know where things are and they’re very caring and compassionate. And they’re always there — an ombudsman has hours."

Oftentimes family caregiver PAs are overloaded and don’t have the legal or medical knowledge to take on this intense, detailed and sophisticated role. When that is the case, you may need to reach out for help.

Hospitals have someone on staff called an ombudsman or patient representative whom you can contact to advocate for your concern. These are staff positions whose role is to help family members negotiate the bureaucracy that is the modern hospital. They can help get your concerns and messages to the right people so the correct action can be taken. They will help you sort out what are reasonable expectations and what are not.

It may also be helpful to talk with the hospital chaplain about your concerns. "They know all the doctors," Fabian said. "They know the hospital system. They know where things are and they’re very caring and compassionate. And they’re always there — an ombudsman has hours."

Don’t wait

Patient advocacy requires planning, and the first step in the plan is for every person reading this to designate a PA by signing a medical power of attorney and keeping it up to date. "And make sure it addresses HIPAA specifically or sign a separate HIPAA consent form," Fabian added.

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